27 April … Maxillofacial surgery: 20 Year Anniversary of total jaw reconstruction!

Dates stick in my brain, particularly when there are events connected to them. Tomorrow marks the 19th anniversary of the Port Arthur Massacre… but, I digress…

Today marks the 20 year anniversary of a complete jaw reconstruction (mandibular something or other within the cranio/maxillofacial surgery unit). I don’t have photos of the occasion, as for some reason my parents believed that noone would want to see the gruesome aftermath of surgery. If only they knew then the interest of social media networks. But, that aside, the event happened without the now mandatory before, during, and after ‘selfies’. (Though the surgeon did take before and after shots for his medical students).

My lower jaw was pushed quite far back – with some of the bones pushing against my trachea. Surgical intervention was proposed when I was 13 and preparation began.

On the 27th April 1995, at 15 years of age, I spent just under a whole work day on the operating theatre. The surgeon and staff at the Royal Adelaide Hospital were fantastic on the day of admission. I was welcomed with warmed blankets and a sheepskin rug to lay on for the duration of the procedure. Staff were quick to tell me that they had heard all about me and put me at ease before being anaethetised.

The story goes that the surgeon spent almost 7 hours close to laying on the ground to perform the operation, knowing that my neck would not handle any movement. Approximately 0.5cm was removed from my top palate and the lower jaw moved down and forward 2.5cm. The surgeon informs me that it was one of the biggest reconstructions he had done. Approximately 43 screws and a hunk of bone from my hip later, I was put back together and sent to intensive care!

From arriving at the hospital at 7am, I remember briefly seeing a clock and my parents at 530pm, thinking that I must have been mistaken: that much time could not have passed since I last saw them, surely. I woke more around 730pm to my surgeon peering over my bed. I remember smiling at him and seeing my family around. (Mum says she could actually see the smile!).

The rest is a case of countless boring details, with some interesting stories mixed throughout.

The ward wasn’t pleasant.It was dark and dreary. Staff were generally unaccustomed to having a teenage girl with an interesting medical history on the ward. I single-handedly brought the average age of the ward from 86 down to 62. Or something like that. The ward was filled with very ill ladies and gentlemen, many of whom did not return home to their loved ones. At 15, this was a little traumatic. It did, however, act as a catalyst for recovery. I was scheduled to spend 3 days in ICU then a week in the ward. Suffice it to say that within 5 days of surgery I was homeward bound!

I love and appreciate nurses, but one of the most vivid memories of this time was the first time I got out of bed. I’d had drains removed from my hip and from my neck (I really must have looked like some kind of monster out of the deep) – I refer to the neck drains as over-sized earrings that looked like hand grenades. Probably not appropriate given that Anzac day was 2 days ago, but …

Anyway, back to the story. I hadn’t been out of bed. I wasn’t sure what damage having bone taken from my hip would have done and I certainly wasn’t sure that walking to the loo and seeing my face in the mirror was the best idea either 😀 Mum asked a nurse for help as I needed to pee (I couldn’t talk – and I was going to save you the details, but hey, when you gotta go … ). Mum was bluntly told: “She can walk, get her out of bed!” … fair call. Maybe. So, we looked at each other and tentatively sat on the side of the bed. For those of you who’ve had general anaesthetics, you’ll know that the first time ‘up’ can be a little unstable. We managed the journey quite tentatively; I cried tears of joy as my face didn’t resemble that of the sea monster I’d envisaged and headed back to bed. (I must say, I am thankful for my dad who, I know, spent a lot of time with a damp cloth cleaning my face post op).

A few hours later, after the doctor had been through, the same nurse was totally different with me – doting and doing her best to see that I was abundantly cared for… Me thinks she finally read my notes 😉

I had visits from some dear friends. Others chose to stay away. I don’t blame them.

I spent an entire term of Grade 11 at home, completing work that was sent home for me to do to help keep me up to date. It was a long process. I couldn’t say “Bucky Beaver” or anything with a “B” for some time.

I grew weary of soup and straws. I think it took around 10 years before I regained an appreciation for soup! My hip healed, and I returned to school to finish school with everyone else.

Of course, the surgeon suggested we wait another year and do it again to complete the job as he couldn’t ‘fix’ my jaw completely in one operation. I politely declined. I think I’ll be ok.

It’s hard to think that 20 years ago life stood still for a bit. I remember being well supported and loved. I remember seeing my face in the mirror that day that I first moved from the bed. Ever surprised by what I saw. Swollen, large and changed. I cried tears of relief and remember saying to mum : “It’s beautiful” … tears well in my eyes even now as I think of how I felt. Years of anxiety over this operation culminated and brought to a head by one view in the mirror. It’s beautiful. It’s all going to be ok …

And it still is … going to be ok, that is. I often forget that we’ve been through a lot and come through. I’m currently facing more again, and I need to remember that it’s going to be ok.

PS – I’ll try to find out my school photo’s from 1995 & 1996 to show the difference!

(Image credit: 20th anniversary picture stolen from dreamstime.com via Google images- sorry)

13 days and counting: blessings in the delay!

I’m sitting in the pre admission clinic yet again. Surgery was postponed from mid March to 29 April. The joys of a weak immune system! Providing I stay healthy, I’ll be under the knife in 13 days. They have said I can watch if I like. Sounds like an opportunity for a memorable experience. Or ongoing income for a counsellor. Either way, it’s something to consider.

It’s amazing how emotions and psychological thoughts change over time. I was rebelling against the thought of surgery a few weeks ago. I didn’t want to go through with it. Everything felt hard and overwhelming. I’ve been here before. It’s a scary place. The truth is that I wasn’t ready. I hadn’t organised my life and my brain hadn’t caught up with reality. I wanted a way out. Anything to avoid the pain of the recovery. I was loving my life as it was and didn’t want the interruption. Self preservation kicked in… As did a fear that I thought I’d kicked.

Death.

Several years ago, before another major operation, I wrestled with my frailty and mortality. I could not see beyond the surgery and it scared me. Over the course of a few weeks I grappled with thoughts and fears that led me to a place of surrender. A place of peace. I became more content with who I am. I trusted that when the time comes to sleep, that everything would be ok. I’d be going home. Eternally at peace, pain free and rejoicing. I had, at that stage, been living life as well as I could. I’d done my best and hoped that somehow, somewhere, I’d helped at least one person.

This story ended with surgery being postponed. I’d developed a sore throat the night before surgery and gone in for admission to be told by the nurse that “We don’t want you dying on the table today!”. Of course, horror crossed her face as she realised what she had said. It’s generally not something you’d hear! Be at rest, my soul. Today is not your day. I can’t help but think I was saved from death that day.

So, as I approached the March date this year, fears crept in again. I felt like I couldn’t handle it. The journey, the pain, the change. What if something goes wrong? I had a dream that I died at the hands of an inexperienced doctor and I generally didn’t want to go ahead. I wanted to keep enjoying going out with my family. I wanted to continue my study and step more into the things that I see happening. I wanted to make a difference again (thinking that I hadn’t been of use to anyone). Good things lay ahead.

I don’t like being held back. I grieve when I’m physically set back. Independence lost, journeys of pain, learning to walk, write, eat … Whatever it is.

Sometimes I just want it to stop.

It will one day.

Until then I want to press on. Move forward. Maybe even make a difference somewhere. Those good things still lay ahead.

While having the surgery postponed due to illness wasn’t necessarily desirable, it has given me an opportunity to do further soul searching, to prepare my house and reconsider my focus. And who knows, I may have been saved from death (again)?!

Surgery is not the most desirable option. Being healed would be much more fun. But, failing a miracle, this is a journey I must walk through. Or hobble through… Either way, it looks like the next chapter is almost upon us.

I’m not sure that anyone enters surgery without some trepidation. But, what was consuming me is now sitting in my pocket. It’s there. It falls out from time to time, but I can put it in its place. I’m now looking to the future…

Time to rise and conquer yet again.

13 days and counting.

TKR: 18 March 2014 (here we go again!)

When I was very young, my knees were bent at close to 45 degrees,  requiring extensive physiotherapy and splinting to get them to straighten. Whilst I look back and am thankful for what it achieved, it was a horrible experience!

I remember my legs being strapped overnight into large heavy splints with a bar in between each leg to prevent movement. Each night was filled with frustration or tears; not to mention the outright defiance as I got older! I’d be sure to rip the splints off in the middle of the night in order to gain such ‘restful’ sleep.  

Each time an adjustment was needed, a new splint was made – much like plaster casting a broken leg, but putting increased pressure on the joint in an attempt to straighten the joint.  This went on for years, and, the reality is that it was a huge success.  My legs became the strongest part of my body. Bike riding became a passion and my knees were my strength. Most other joints let me down; but not my knees! At least not until I was around 20 years old. Things changed dramatically. Walking became difficult and I got weaker. Bike riding became a novelty experienced reserved for flat terrain and the elusive ‘good days’. I missed it. I still miss it.

I was given a new lease on life after a total knee replacement of my left knee in September 2012. I slowly rebuilt strength and found a new desire to walk… That lasted around 3 months: just long enough to give me a taste of independence and excitement that this physical body can do more!  And then it happened: the right knee decided that it had done enough, that it had been compensating for the left for too long and couldn’t keep up.

If all goes to plan, I will be undergoing a second total knee replacement in just under 3 weeks time.  There is a significant bow in my leg, putting pressure on the knee and causing uneven erosion of the bones. To make matters slightly more complicated, my right ankle turns inward and is almost on the ground.  I know that we’re venturing again into the world of the unknown and sometimes, I’ll be honest, the fear overwhelms me.  We know the road ahead is hard. It’s long and arduous. There will be triumphs and set backs. Every time I face surgery I’m never completely sure that I’ll have the strength to get through it.  But, get through it, I do, and get through this, we will.  

I was reminded tonight that one of the benefits of going through such a journey is the strength that results. It was a timely reminder that though the path set before us unknown, there is hope in the journey.  There are triumphs and joys amongst the hard times. There are people to share the journey with, and a changed life ahead to enjoy .  

I hope to look back in 18 months time and see that it was well worth it; that the strength will far outweigh the pain of the journey.  In the meantime, I’ll take one day at a time, possibly even one minute at a time.  I’ll celebrate the successes and look forward to seeing progress; and among the tears and pain, I hope to have those near and dear to make bring much joy and laughter 😉 

Peace for the journey
Strength be near
Love overflow
Joy be complete
Grace abound
Life be lived

xx

Life with JRA/JIA – Part I: It’s time to share!

I had one of those ‘moments’ recently where something became abundantly clear.  I wrote a brief comment on a forum about my experience with JRA and soon after was slapped with the feeling that I have a journey to share and that someone may benefit from it. It is a lifelong journey; one which will never be covered by a single blog post. But, I must begin somewhere…

I was diagnosed with Juvenile Rheumatoid/Idiopathic Arthritis (JRA/JIA) by the time I was 4 years old. My parents were positive that there was something ‘wrong’ with me from 6 months of age, yet were faced with doctors saying that it was “just growing pains”, or suggesting they “stop worrying”.

As time went by it became more apparent that something was not right. Their baby girl would cry incessantly for no apparent reason, scream when put to her feet, cry and trip over when walking (to name a few symptoms). To put an end to my mother’s frequent but hopeless visits to the local doctor, a GP referred us to a paediatrician – Dr Billy Tao.

I am told that Dr Tao listened intently to all my parents said and posed a question that resonated and scared the hearers: “Have you ever thought it could be arthritis?” Obviously, my parents aren’t doctors and even Dr Tao couldn’t make a diagnosis on anecdotal evidence, but the thought was like a light bulb. It would explain so much. And, the thought presented many a question.

What followed was a barrage of tests, time in hospital and a waiting game. I can only imagine the anguish my parents felt at not knowing why their daughter hurt so much. It hurts me to think of the nights my mother cried herself to sleep, questions running through her head:  What will the future hold? What went wrong? Where to from here?

If I could speak to those questions and to those voices from the past I’d say:

You are amazing! You can do this! Your family can do this! Your daughter can do this! It is not your fault. The road ahead is rough at times, but it is a road you must travel down. You will hurt, but you will rejoice. You will overcome obstacles that others can’t even imagine. let alone tackle. You will love with an unending love; a love that understands that life is more than the superficial and material things on this planet. You will share in the sufferings and grow stronger for them. You will bend but not break. You will breathe hope and courage. You will cause a generation to live beyond themselves and inspire a nation. You will. Your daughter will. 

Now, that may all sound a bit cocky and far fetched, but I believe it! I believe that nothing I have been through is wasted and that my parents’ pain and effort to care for me and journey with me will have far reaching consequences: If I will stand up.

I’ll stand up and tell you of the journey. Of what I remember and what I have been told. I’ll take you through the last 30 years of “suffering” and tell you why I loathe that word. I’ll share the good, the bad and the ugly. I’ll share the torment and the pain. I’ll share the joy and excitement. I’ll share the hope that  I have found and continue to strive for in all circumstances.

We are more than conquerors!

One year on: life after a total knee replacement!

The 25th September 2013 marks the one year anniversary of an operation that sparked physical hope and freedom. A total knee replacement was both incredibly daunting and incredibly exciting! The daunting feelings probably speak for themselves. It is major surgery!
I’ve been through more surgical procedures than I can remember, but each presents unique challenges.  The total knee replacement was ‘exciting’ as I had reached the point where anything had to be better than the pain and quality of life that I was facing.

As most know, having an active 3-4 year old and a newborn is physically demanding at the best of times. I’d reached a point where I could barely walk around the house; some days barely able to walk from the bed to the chair.  I was no longer going to the shops or parks unless we took the wheelchair. Any outing took its toll one way or the other. The backyard was out of the question and I was getting concerned that my boys would miss out on having their mum go out and about with them (even just a bit!).  Nights were difficult and pain sometimes felt like more than I could bare. Although it was still a big decision, when the time came to have my left knee replaced, it was welcomed and tackled with gusto.  We planned ahead: my husband stopped work, my parents came to stay with us and we gathered a group of friends for support.

On the morning of the surgery, I said good bye to my family to take up a hospital bed again. Having many complications, and being a bit of a risk I received the ‘honour’ of being first on the list. Getting all the anesthetic needles for a spinal took a painstaking 45 minutes. I had just told them that I had had enough of being prodded and to knock me out when the line in my back finally went in.  I was very relieved, though I still had significant bruising weeks later!  After that, all I could do (and needed to do) was lay there and let the surgeons do their thing. I was awake through the procedure and was quite intrigued by the noises and amount of prodding that takes place. It is certainly a brutal operation!

Once I was back in the ward and the anesthetic wore off, the pain was intense! I tried to avoid major pain killers, but failed. I soon learned that I wasn’t going to manage a good recovery without some analgesia!  That said, I knew that it had been a success as soon as the physio’s got me to stand on my feet.  Whilst incredibly difficult to move, I could tell that my knee was far stronger than I’ve ever remembered; it was just a matter of time and effort to get to the point where I could use it!

The first 2 weeks were the hardest, with the next few months being a slog of rehabilitation. One of the hardest parts of the recovery was having my 4 month old crying in the cot. I could get to him and pick him up, but not be able to walk anywhere with him. I think my first steps while holding him after the surgery was closer to Christmas. As I look back on it I can see that there were some significant emotional challenges to the journey, not just physical.

Good days came, bad days went. My 4 month old provided me with some much needed inspiration and I was determined to recover as strongly and as quickly as I possibly could! There were challenges along the way, but by the grace of God I became stronger each day.

Just a few months after the surgery I started to walk a little further than I had for years. My mobility has drastically improved, though let down by the other knee and several joints. I can do things that I haven’t done for years and will welcome a replacement of the right knee if or when the time comes.  I think I waited too long for the left!  If I had the time again, I would do have it done sooner! Don’t get me wrong – the surgery was brutal and the recovery process was full of challenges, painful and grueling; but the benefit has far outweighed the cost.

A big thank you to my friends and family who helped me through this last year. It would have been much harder without you!